Micheál Martin (Cork South Central, Fianna Fail) | Oireachtas source

Cystic fibrosis, CF, is a very debilitating condition. Ireland has the largest cohort per capitaof population of people with CF. Consistent research has helped improve the quality of life and extend the lives of people with CF. Given that we have the largest cohort per capitaof population of people with CF, there is an onus on this country to be in the vanguard in terms of research and new technology in respect of extending life and improving the quality of life of people with CF. Orkambi is the first drug to impact on the underlying cause of CF for up to 50% of people with the condition in Ireland. It has been shown to produce both a reduction in the worsening of CF requiring hospital admissions and a sustained increase in lung function and weight, which is an important issue in the context of CF care. Orkambi has been approved by the Food and Drug Administration in the US and could apply to approximately 50% of people with CF in Ireland.

A wonderful article written by Orla Tinsley, a CF patient, that appeared in The Irish Timeson 2 June 2016 details the new life Orkambi has meant for her and those with compassionate access to the drug via the relevant pharmaceutical company. It is worth reading the article to get a sense from somebody who has lived with this condition all her life and who has fought all her life to try to improve quality of life for people with CF. Orkambi has transformed her existence. Ms Tinsley gave an interview on "Today with Sean O'Rourke", some time back to talk about the impact of the drug on her. People such as Jillian McNulty have testified to the positive impact a drug such as Orkambi can have on CF sufferers. Orla Tinsley made the point in respect of one of her friends who has compassionate access to the drug that "Removal of Orkambi is a catapult towards death for her."

This is what it is like in the CF community for those who are taking Orkambi. Others have been waiting for approximately two years since the drug was first approved to gain access to it.

It is not just a Government issue. It is also an issue for the pharmaceutical companies. The pharmacoeconomic unit rejected it in the context of the cost submitted by the company. Negotiations between Government agencies and the company have been going on for a considerable length of time. Is the Government still committed to giving CF patients access to Orkambi? As I have asked before, is it not time for the Government to establish a separate fund from the health budget in which we could continuously invest to provide for new technologies and drugs such as this so we can be at the vanguard of new developments in medications and drug therapies?

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